I Just Want To Talk

Discussion in 'Rants, Musings and Ideas' started by Heart, Dec 31, 2012.

  1. Heart

    Heart New Member


    This is a little strange for me. I've never done this, but I just feel like lately I need someone to talk to. I hope it's okay. I don't really know what kinds of things are appropriate to post here.

    My story is...

    I was born with a congenital heart defect. I had a lot of surgeries throughout my life. If you ask me how many surgeries I've had, I honestly can't count them all.

    I was born with something called single ventricle, which basically means I only have one working ventricle in my heart. I was also born with holes in my heart and transposition of the greater arteries.

    I had some surgeries when I was born, but my first major surgery was when I was 5 called the Fontan operation.

    It was the stereotypical heart surgery, where they cut me open down the middle.

    Things were fine with my health for a few years after that, but when I was around 12 years old, I had two big problems. The first was that my heart started skipping beats, so I had a Pacemaker put in. When you are a kid and you get a Pacemaker put in, they sometimes insert it in your abdomen rather than next to your heart. So, I have a horizontal scar on my left abdomen which is probably around 5 or 6 inches long. I think if I only had the vertical scar down the middle I wouldn't mind so much, but this scar I particularly hate because it is raised. If you run your hand over it, you will feel the roughness. It is really gross and embarrassing.

    The other problem that arose was that I was diagnosed with an extremely rare disease called Protein Losing Enteropathy. It basically means that my body loses protein. I'm a guy. I'm also 29-years-old, but I honestly have the body of a 12-year-old. I look incredibly young!! I am constantly told how unbelievable it is that I'm 29. It has its ups-and-downs. I think I kind of accepted the fact that I'm always gonna be a ridiculously skinny guy, so I started to embrace it and be myself when I was around 21. I dress sort of like a skater kid. If you saw me with a bunch of 16 or 17-year-old teenage skater kids, you'd probably think I was in their same high school. Unfortunately, I really have no muscle. I don't have any fat either though, which is probably because I eat healthy, but I literally have almost no muscle. I can wrap my hand around my arm with my fingers touching. Not just my lower arms... my BICEP! Let me repeat, I'm a 29-year-old MALE. I'm 6'0" and weigh around 120 lbs. If I eat foods packed with protein, I get diarrhea or will some times throw up, although that has happened much less since about 8 years ago. Now it is usually just diarrhea.

    The thing about Protein Losing Enteropathy is that it is such a rare disease and it makes it hard to talk about it. So, as you may remember, I had the Fontan Operation when I was 5-years-old for having my congenital heart defect. At that time, The Fontan Operation wasn't perfected. It was a somewhat new medical surgery. The result was that some children ended up getting this unexplained disease, Protein Losing Enteropathy (or PLE). Since then, the operation has been perfected and nowadays there are no new children that get PLE. So, only a VERY SMALL number of kids that were born with a certain type of congenital heart defect and had to have the Fontan Operation BEFORE IT WAS PERFECTED got PLE. As you might imagine, the number of kids that got PLE was incredibly small. Throughout the entire world, there are maybe only 5,000 kids with it. Added on to the fact that the operation is now fixed, there is absolutely no funding for PLE research! NONE! So, there are zero treatments available!!! The mortality rate for patients with PLE is 54% within 5 years of being diagnosed.

    When I first was diagnosed with PLE I was the second kid in the entire world to be treated for it. They weren't really sure what they were doing and they told me the treatment wasn't technically certified and it might not cure anything. I used to take heparin shots that I would inject myself with daily for 10 years, but it didn't do anything. I would also go to the hospital once or twice a week (missing school that often) and stay in the hospital hooked up to an IV all day getting protein/albumin infusions.

    At that time, I met one other boy there that also had PLE. They told him he should get a heart transplant and it might (They didn't really know) cure the disease. He got the heart transplant, but the surgery didn't go well and he died in the recovery room.

    Ugh! I'm sorry, I keep getting sidetracked saying other things, when I still want to finish my first thoughts. Let me just say, that throughout middle school and high school, I was EXTREMELY sick. I was even given a Make-A-Wish for the kids who have a terminal illness like cancer or something. I didn't wish to go to Disneyland hah! But... since that time, around when I was like 19 or 20, I randomly started getting better. I still can't hold my protein, but I stopped throwing up everyday and always, always, always feeling tired, weak, and sick. There is really no explanation for it.

    So, as I said, PLE is extremely rare. If I go to a hospital and tell any doctor except a congenital heart doctor or pediatric cardiologist that I have Protein Losing Enteropathy, they never ever know it. Even a big hospital like UCLA or Columbia won't know it. If you search it online, you won't even find much information. It is seriously that rare, but I am doing better.

    Okay, let me speed things up cause I feel like this is getting long. I am just getting emotional saying things that I don't usually say.

    Nowadays I am in a much better place health wise. I don't even tell people that I have any kind of problem. I've worked at the same job for the past 2 years and they have no idea I even have a heart problem (but they do always make fun of me for being skinny and telling me I have to eat more meat and work out which is annoying, but I can deal. It's better than pity).

    Unfortunately, other health complications have arisen since my high school years. I have gallstones and I had the surgery to take the gallbladder out. Since I have so many surgeries, they can't remove it microscopically, so I have another big scar where the gallbladder is, which is an upwards scar on an angle about 4 inches long. Unfortunately, there was a complication during that surgery, so while I have the scar, I also still have my gallbladder. The surgeon couldn't remove it and closed me back up in fear of something bad happening. So, I have gallstones still.

    I have Hepatitis B, which I just found out about recently.

    My heart started acting up again these past few years and I have something called Atrial Flutter. It's basically where your heart is out of beat. Not really skipping beats like with my Pacemaker, but just acting funky. You would imagine that my Pacemaker would fix that, but the Pacer is not capable of it because it is a different sort of problem. I'm not Pacemaker dependent. Which means that if my Pacer stopped for any reason, my heart would still carry a beat and work on its own, but it would be very weak and skip beats. The problem with Atrial Flutter is that you can get clots in your heart from it easily, so I'm taking lots of blood thinners now and I have to monitor my blood-thinness level with monthly tests at a local blood lab.

    My doctors have been very concerned about my Atrial Flutter recently and they are concerned I might need to have another open heart surgery where they would cut me completely down the middle again (the BIG surgery). They are considering doing it in a few months possibly. I'm a little nervous about that.

    I also have hemorrhoids which is especially embarrassing for me because I am gay. I hope it's okay to say that. If you don't support homosexuality, please don't post. I really would prefer not to hear those kinds of comments right now.

    I actually am kind of popular. I don't think I'm totally unattractive despite my lack of muscle and being extremely skinny. What is awkward is that when I meet any guy and we have a good date or hang out, things are cool and then we go to the bedroom and I take my shirt off and it's just downhill from there. I feel very very awkward about my scars. The way they react or show it accidentally in their faces makes me so uncomfortable. I've met a lot of guys and it is always strange explaining to them everything I just explained to you guys right away. I don't like telling people about my health issues because growing up I used to be constantly pitied for it and it drove me nuts!!! I was always asked "are you okay?" "do you need to rest?" "can you do that?" "do you need to sit down?" For things like.... walking up a small hill, riding my bicycle, carrying a mildly heavy box or groceries, drinking a beer, playing tag, etc... Do you know how frustrating that is?!?! In addition to this... I was always THAT kid. "Oh, you know. The kid with the heart problem." Yeah. THAT kid. My family used to introduce me to strangers or people I'd never met and immediately start discussing my heart problem with them while I was 10 feet away and they would be ignoring me, but talking about me and going "oh that's so sad." I used to have to BEG my Mother not to mention it and she still would. I think she liked the attention. Since I grew up in the same city throughout grade school, classmates always knew, especially because I was sicker at that time. When I entered college and started somewhere as a new kid, I chose not to tell anyone. My close friends know, but generally speaking. I wait about a year to tell people about my problems because by the time they've seen me doing all these things, they obviously know I am an independent person who can handle myself and doesn't need to be babied and they are like "woah! You have a heart problem? Crazy." but we don't really talk about it, which I kind of like.

    Despite that, I do feel like I need someone to talk about it with lately. I am mainly concerned about my romantic endeavors. My boyfriend and I dated for one year and we broke up about a year ago. It's been pretty rough since then. I'm getting older. I'll be 30 next year, but because I look so young, I often meet young guys. While this might sound nice, we are just at different places in our lives. I'm looking for someone to settle down with who will love and care about me and they are looking for some fun. I try to meet guys my age, but they are usually don't call after we have sex even if everything up to that point goes well. I don't know if it's because they just all lose interest, they are also looking for fun and just being players, or they aren't attracted to me anymore once they see me naked.

    It also sucks because a lot of my friends moved recently and I'm a bit lonely. I live in NYC and it's kind of hard to make friends here.

    I've wrote so much. If you read this all, I salute you. I'm so sorry. I am just really nervous about life lately and it's rough juggling all my health issues with my work, dating issues, and lack of people to talk to. I really don't know what I'm expecting out of this.
  2. WildCherry

    WildCherry Staff Member ADMIN

    Hi, and welcome to the forum!

    I just wanted to reply to let you know that I read your post. If you ever feel like talking (or venting), feel free to drop me a PM anytime!
  3. total eclipse

    total eclipse SF Friend Staff Alumni

    I too read your post hun just glad you found a place to let out all those words and thoughts hun hugs